12 replies to this topic

[CallMeLucky]

So after 5 straight negative I am now at 0.0228%.  We were just starting to talk about possibly stopping and now the clock resets for at least another 2 years.  I haven't done anything differently, I am consistent in taking my Sprycel 100mg everyday.  I am so sick and tired of this damn up and down and don't understand why I am seemingly doing so well, but at the low level have this inability to stay undetectable.

 

I just had hip surgery, so I am barely able to move around.  Twisted my other knee while on crutches so I am basically hobbling.  I am only 43 years old and I have all these crazy issues that are clearly because of using TKI even though everyone (doctors) deny that and say it is unrelated.  I get hurt easier and can't heal properly.

 

Now I have to go three months while going through rehab worrying about my next PCR.

 

When is it enough, I mean seriously, when is it just enough already?  At what point do we stop paying for the things we've done wrong in life?

 

  

 Date  Months  PCR Percentage  7/7/10 0 1.20000% 10/25/10 3 0.25000% 12/13/10 5 0.36700% 3/14/11 8 0.00810% 6/13/11 11 0.00000% 9/19/11 14 0.00084% 12/5/11 16 0.00000% 3/12/12 20 0.00400% 6/11/12 23 0.00000% 9/17/12 26 0.00000% 12/18/12 29 0.00000% 1/11/13 30 0.00000% 3/18/13 32 0.00000% 4/15/13 33 0.03600% 5/20/13 34 0.04600% 6/3/13 34 0.02390% 7/1/13 35 0.01920% 7/29/13 36 0.00340% 10/7/13 39 0.00540% 1/6/14 41 0.00930% 3/24/14 44 0.01300% 4/21/14 45 0.00480% 7/28/14 48 0.00000% 11/3/14 51 0.04700% 12/15/14 53 0.00000% 3/9/15 56 0.00000% 6/15/15 59 0.00000% 9/14/15 62 0.00000% 12/14/15 65 0.00000% 3/24/16 68 0.02280%

 

So tired of everything.....

[Marnie]

Hang in there, Lucky.  I'm with you on the PCR frustration.  Seems like everyone else is undetectable, but it is elusive for me, too.  Your numbers are better than mine.  I would think that your numbers would be low enough to go to 50 mg.  That's what I'm at, and I seem to be holding at just under MR4.  Will your doc consider cutting dosage rather than stopping completely?  

 

Sorry to hear about the hip and knee.  Rehab and recovery is awful.  Take it easy, but follow your pt's instructions.  When I had knee surgery, I was pretty lazy about the rehab and it took a couple of years to get back to almost normal.

 

Sending positive vibes your way!

Marnie 

[Buzzm1]

CallMeLucky, I can understand your frustration.  Looking through your PCR results, to say they are highly erratic is an understatement.  There doesn't appear to be any rhyme or reason to them.

 

7/28/14 48 0.00000% 11/3/14 51 0.04700% 12/15/14 53 0.00000%

 

There are huge swings ... how reputable is the testing lab?

[CallMeLucky]

@Marnie - I tried lowering dosage and my numbers climbed, but it coincided with the change to this lab.  Which leads into @Buzz question.  Supposedly this is a very reputable lab, Genoptix, they are supposed to be the gold standard for PCR testing.  They are a Novartis lab and I believe Druker was involved with them somewhere along the way.  I have questioned from day one using this lab if there is a problem at the lab.  My results were much more consistent when I was at Sloan and then using Qwest.  It was when they switched me to Genoptix that things started bouncing.  My gut reaction this time is that it is the lab and not me, why did I suddenly have a 1 log increase?  I guess we'll see with next test result.  It just messes with my head at a time when I didn't need it because I am dealing with other health issues.  It also derails my possibility of going into stop trial.

I just don't know if I have a stubborn case of CML that despite being knocked down by TKI very early on and no indication of mutation or overt resistance, seems to be stable and undetected, then pops it head up all of a sudden.

[kat73]

Lucky - First, remember what Dr. Cortes said:  Anything under .09 is indistinguishable from undetectable.  Second, your reset calendar will become moot before 2 years are out, because "they" are going to wise up by then and start letting us reduce dosage and/or try cessation with less strict threshold requirements.  Third, most labs don't run out the decimal places as far as yours does, so most of us never see these swings.  (And are the better for it.) You are in great shape, CML-wise, just keep remembering that salient fact.  I'm sure it's the test's fault - accuracy at that level is a pie-in-the-sky wish, no matter who does the test.  I understand, and have experienced, your disappointment with the numbers.  But you have never lost that crucial 0 to the right of the decimal point since you achieved it in 2011.  You are in a really, really good place.  Someday you will get off this stuff.  

 

Pain and immobility (crutches! yech!) do a tapdance on your spirit.  This, too, shall pass.  Your new job is rehab.  Concentrate on that.  When you are back to motoring along on your own two pins, life will look better.  Resolve that you will not think about the PCR test for the next three months.  Every time your mind drifts to it, steer it away.  It will become a habit.  After all, this is not denial or repression, because you've already thought and worried enough on the subject and - most important - there isn't anything you can personally do about it anyway.  But you CAN give your poor worn-out and downtrodden spirit and brain some R & R.  If you were trying to take care of a dear friend in this situation, you know that this is what you would advise. 

 

I hear ya about what exactly is the goldurned point of being almost but not definitively cured or safe from death for the next forty years all the while being tested again and again and enduring all other organs and cells being screwed with.  We keep coming up against the cold hard fact that NOBODY knows what lies ahead.  We ARE the vanguard.  No one on Earth has lived with CML for forty years.  Yet.

[Antilogical]

CMLucky - I was similarly puzzled by a couple of blips in my PCR tests.  I finally realized that the testing lab for the large medical center I go to is actually comprised of 3 labs that are separated by many city blocks.  While my tests typically are routed to the same lab, they sometimes are routed to a different one.  Each lab does things a little differently.  One of them reports my results with the local housekeeping gene instead of the I.S. standard.  Mystery solved.

[Frogiegirl]

Kat73 your an angel. I love reading your posts. can I adopt you???? dare I say mamma bear of the group...???

[kat73]

Aw, gee, thanks.  I just know how much other peoples' words mean to me here, and so I hope to never miss an opportunity to return the favor.

[scuba]

Kat73 ...

"Lucky - First, remember what Dr. Cortes said:  Anything under .09 is indistinguishable from undetectable.  "

 

Just to be correct - it's not 0.09 that is indistinguishable from undetectable ... but rather < 0.01 that is indistinguishable and that's M.D. Anderson scale. 0.01 M.D. Anderson is roughly 0.003 I.S. and the third decimal place is irrelevant hence "undetectable".

 

Gary went from "undetectable" to 0.02 ... just above the threshold. His result is still fantastic, but as Gary wrote, he wanted to try stopping or at least lower dose. It's quite possible this is a lab mistake - I have had that happen (i.e. someone else's results switched with mine). I would consider retesting now and not wait in order to verify that this might be a testing blip. I have a hunch that is what is going on.

[CallMeLucky]

Thank you Kat - thoughtful words.

 

Unlike in the past I don't really feel that crazy sense of anxiety, perhaps because I have been through this a bunch of times.  Maybe this will be the time it doesn't go back down, but I've felt that way before and it seemed to work out.  Overall I have a good trend.  Right now I'm mostly pissed off.  Just tired of the testing cycle and being dependent on these imperfect results as a guide for treatment decisions.  I am very frustrated with this lab; perhaps they are the best and their equipment is so sensitive they catch blips, but it just seems odd that something that moves slow (i.e. chronic phase CML) would jump more than 1 log in the span of three months.  Surprising that it has done it in the past and then dropped back down.  So either I have this very volatile form of CML that is bursting to explode, or there is something else at play.  I am 100% percent compliant, I have not missed a single pill and I never go more than 2 hours passed my dosage time each day.  So why is it seemingly calm for an extended period then suddenly blows up dramatically?  If this is the result of using the "best PCR lab" then I think I would rather go back to Qwest.  My long term outcome would have not changed over the last 5 years if I had only taken a PCR once each year, but I sure as hell would have slept a lot better.

 

Michael - Repeating the test right now is not ideal.  Mostly because it is a 2 hr drive to city and I am laid up following surgery.  I also had to change the time of day I take my pill since they had to put me on Prilosec for a few days following surgery.

I am tempted to wait 2 weeks for things to settle down and then tell my onc I want to repeat the test with Qwest.  I'm sure he will balk at that idea.

[kat73]

Scuba - Oops, yes, you are absolutely right and my math is bad.  Everybody, my apologies for steering anyone wrong.  But are you also saying that Dr. Cortes made that comment only in the context of MD Anderson's numbers?  In other words, .01 Anderson is really so very much lower when converted to IS, that it is then (in IS terms) indistinguishable from undetectable?  If so, then I'll have to let go of that comment as solace (and stop using it!) because it's only true for MD Anderson patients.  I do think that anyone with TWO zeros to the right of the old decimal point - in IS reporting - is so close to undetectable as to not need to sit up nights worrying.

 

Lucky - It sounds like you're just not ready to let this one go yet.  You've got the energy of the pissed off person, so maybe you should have one more crack at it.  I'm sure it's nothing you're doing wrong, and I'm sure your CML is not volatile and bursting to explode.  From where I sit, it looks like a bedraggled three-legged goat that's been left out in the rain for three weeks.  But, never mind.  I had a log jump once - but my onc treated it with a shoulder shrug, so I tried to, too.  I also had a log jump DOWN once, and I got all ridiculously happy.  Also a blip.  It's the trend, the trend, the trend.  As Trey has said, these tests are not - cannot be - that accurate.  Anyway, OK, see if your onc will address the lab issue.  But don't become a lab shopper!

[thatguy]

Thank you Kat - thoughtful words.

Unlike in the past I don't really feel that crazy sense of anxiety, perhaps because I have been through this a bunch of times. Maybe this will be the time it doesn't go back down, but I've felt that way before and it seemed to work out. Overall I have a good trend. Right now I'm mostly pissed off. Just tired of the testing cycle and being dependent on these imperfect results as a guide for treatment decisions. I am very frustrated with this lab; perhaps they are the best and their equipment is so sensitive they catch blips, but it just seems odd that something that moves slow (i.e. chronic phase CML) would jump more than 1 log in the span of three months. Surprising that it has done it in the past and then dropped back down. So either I have this very volatile form of CML that is bursting to explode, or there is something else at play. I am 100% percent compliant, I have not missed a single pill and I never go more than 2 hours passed my dosage time each day. So why is it seemingly calm for an extended period then suddenly blows up dramatically? If this is the result of using the "best PCR lab" then I think I would rather go back to Qwest. My long term outcome would have not changed over the last 5 years if I had only taken a PCR once each year, but I sure as hell would have slept a lot better.

Michael - Repeating the test right now is not ideal. Mostly because it is a 2 hr drive to city and I am laid up following surgery. I also had to change the time of day I take my pill since they had to put me on Prilosec for a few days following surgery.
I am tempted to wait 2 weeks for things to settle down and then tell my onc I want to repeat the test with Qwest. I'm sure he will balk at that idea.

Do you get your pcr's drawn on the same day of the week every time? How long have you been with Genoptix now, in terms of pcr's processed? Review your reports and compare draw time and date, to reporting time and date. See if there is an extended period between the lower results and this latest. Let us know.

[CallMeLucky]

My appointments are almost always on Monday morning early. I usually get a call from Doctor by the middle of following week. There is nothing particular about the test that would indicate why it suddenly jumped.